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Post by michellea on May 6, 2015 19:18:14 GMT -5
ouch! That does not sound pleasant. Fingers crossed that you get the results you want.
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Post by bros on May 6, 2015 19:59:12 GMT -5
He said today it is either a NK Cell LGL Lymphoma or a NK Cell LGL Leukemia - he does not want to use cancer to describe what I have, as it is beyond a regular cancer, it is something *very* rare.
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Post by healthy11 on May 6, 2015 20:54:31 GMT -5
The following article says NK cell LGL conditions are more prevalent in males, and thankfully, chronic NK cell Leukemia does have a favorable prognosis: www.medscape.com/viewarticle/556140_4 What do the doctors recommend in the way of treatment? We're keeping you in our thoughts and prayers for a positive outcome.
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Post by bros on May 7, 2015 8:14:34 GMT -5
He says that I meet 2 of the criteria to begin treatment, so he wants to start it in a few weeks, after he gets the results from all of the stuff yesterday. He said oral chemotherapy is the most likely option - a high dose of prednisone, or maybe some methotrexate, he mentioned a third drug, can't recall it right now
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Post by Mayleng on May 7, 2015 8:15:00 GMT -5
Ouch! so sorry you have to endure all this.
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Post by dhfl143 on May 8, 2015 12:43:55 GMT -5
I am so sorry Bros. Do you have a support system of family to lean on during treatment?
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Post by bros on May 8, 2015 14:34:01 GMT -5
I am so sorry Bros. Do you have a support system of family to lean on during treatment? yeah - my mom and dad come to all of the apointments and most of my extended family knows - going to inform the rest this weekend. My uncle who lives like 5 minutes from me said if we ever need anything, he can help.
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Post by michellea on May 8, 2015 14:43:09 GMT -5
I know we can't give you hugs or keep you company while you are recovering, but please lean on us for cyber support. You are an important and loved person in our community and I know that we all want to see you beat this thing. {{{HUGS}}}
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Post by bros on May 8, 2015 16:04:36 GMT -5
My aunt just offered to drive me and my mom into the city for all future appointments & chemo.
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Post by healthy11 on May 8, 2015 16:47:39 GMT -5
I was hoping when the Dr. said oral chemo, it wouldn't require you to travel for treatment. When you say you have to drive into the city, does that mean New York City or someplace in NJ? In any case, we all hope you respond quickly and favorably! We're keeping you in our thoughts and prayers.
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Post by bros on May 8, 2015 16:50:14 GMT -5
In NJ, NYC is 'the city'
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Post by michellea on May 8, 2015 21:33:51 GMT -5
Lol - in Southern New Hampshire and Eastern MA, the "city" or "in town" is Boston!
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Post by Mayleng on May 9, 2015 6:35:12 GMT -5
Ditto what michellea said. We are here for you.
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Post by dw on May 9, 2015 8:46:53 GMT -5
Glad to know you are getting expert evals and therapy; the uncertainty is really tough though, esp before treatment begins.
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Post by dhfl143 on May 9, 2015 15:50:50 GMT -5
Ditto to Michellea's comments. Really glad you have family support. It can make a huge difference. Did they give you a treatment protocol for how many weeks of chemo treatments yet?
Appreciate you keeping us posted, because we really do care.
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Post by bros on May 9, 2015 16:20:37 GMT -5
Ditto to Michellea's comments. Really glad you have family support. It can make a huge difference. Did they give you a treatment protocol for how many weeks of chemo treatments yet? Appreciate you keeping us posted, because we really do care. They need to figure out if it is lymphoma or leukemia first, then test it to determine the exact type of the rare lymphoma or leukemia - he might have to just come up with a treatment regimen ,as there is no standardized regimen for this lymphoma or leukemia - if it is the leukemia, he might just ask the guy who discovered it for a good regimen
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Post by Mayleng on May 11, 2015 7:43:40 GMT -5
Is a bone marrow transplant an option?
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Post by bros on May 11, 2015 8:43:03 GMT -5
I don't think it is on the table at the moment - tey want to try oral chemo first, which should be effective.
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Post by kewpie on May 11, 2015 15:46:58 GMT -5
Hi Bros,
I hope you have a speedy recovery. You are in my thoughts. Please keep us posted on your progress.
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Post by michellea on May 18, 2015 8:49:44 GMT -5
Bros - Just checking in to let you know that I am thinking of you!
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Post by Mayleng on May 18, 2015 11:12:24 GMT -5
Me too. How are you doing?
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Post by bros on May 18, 2015 19:59:27 GMT -5
Went to the doctor today - he had multiple pathologists, including an associate professor at Columbia University, look at my blood and bone marrow.
He said they came to a conclusion, and that they now are of the opinion that it is Chronic NK Cell LGL Lymphoma, with T-Cells.
Fo a point of reference, he said that one of the people he consulted - a person who had been an pathologist at MD Anderson Cancer Center in Teas for 30 years, said that he had only seen 5 cases in 30 years.
It is managable, but not curable. He expects the chemo to put me into remission, and he's hoping for complete remission.
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Post by dhfl143 on May 18, 2015 21:21:59 GMT -5
That is great news with a positive prognosis of getting you into remission. Between now and then, you are going to have some ups and downs--know that we are in your corner and we'll be there for you to share the highs and lows and ultimately rejoice in the great news that you are in remission!
Hang in there!
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Post by healthy11 on May 18, 2015 22:18:23 GMT -5
Yes, we are ALL keeping you in our thoughts and hoping for complete remission!!
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Post by dw on May 19, 2015 6:23:16 GMT -5
Thank goodness your pathologist did blood work on you while you were symptom free. Sometimes a correct diagnosis seems like good luck. Thank goodness your oncologist is thorough and has a strong network of colleagues with whom to consult. Hoping for the remission asap. When do you start, how long?
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Post by michellea on May 19, 2015 9:15:56 GMT -5
I am hoping for complete remission, too! It sounds like you have a solid team - this is encouraging. Take a deep breath as you process all of this and take comfort in all of us cheering you on.
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Post by bros on May 19, 2015 9:46:01 GMT -5
Thank goodness your pathologist did blood work on you while you were symptom free. Sometimes a correct diagnosis seems like good luck. Thank goodness your oncologist is thorough and has a strong network of colleagues with whom to consult. Hoping for the remission asap. When do you start, how long? I start the day after the pharmacy gets the meds in
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Post by Mayleng on May 19, 2015 15:17:45 GMT -5
I too am praying for complete remission for you. If you were here right now, I would give you a great big hug. Sending good vibes and good karma to you to help you with your treatments.
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Post by kewpie on May 22, 2015 10:16:06 GMT -5
"If you were here right now, I would give you a great big hug." Like wise!! You are in my thoughts constantly.
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Post by bros on May 22, 2015 10:35:14 GMT -5
My oncologist also recommended that I consider... fertility preservation methods before starting chemo.
I scheduled an appointment for Tuesday.
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